Heylo from Confusing Girl :)

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Heylo from Confusing Girl :)

Post by Loki on Fri Mar 16, 2012 11:07 pm

As my doctors like to call me albino

I tend to not do anything in the normal fashion...
I was diagnosed with you standard Migraines when I was 14, which got upgraded to Chronic at 17 and then to Status at 19...
By the time I hit 23 I started having attacks of cluster headaches in bouts of 7-15 every few months sometimes 5 months apart, now I get them as little as 2 weeks apart, blissful fact I get with this is that they are relatively short in comparison to a migraine, bad point is that it is the worst pain I think I've felt, and I've fallen down stairs, broken my back, been attacked by a dog... had a status migraine that lasted for 8 days once and spent most of it in hospital, and one of the 15 minute cluster headaches... way worse on pain scale... its like a lancing poker being stabbed into my head that someties I actually end up screaming from it even though the noise doesn't do me any favours... I also get super agitated waiting for the "Next" one >.<

And then around 6 or so months ago I started getting the sparkly dots and went to say good bye to people as a horrid migraine was coming, take some painkillers and have a rest in a break room (I was at work but I had a break procedure to see if it was a big or little migraine)... and I got one step and boom... I face planted the floor... apparently my left leg wasn't working, neither was my arm, and I couldn't talk properly, I was slurring something aweful. Ambulance came and they thought I was stroking, They eventually figured I wasn't so I got taken off the bed and dumped off onto a chair in the waiting room which I promptly fell off a few times as I could hardly keep my self still... 3 hours later they made me walk to a bed grabbing on to things and dragging my dead leg... sat down, gave me diclofenac and said go home, your already being treated for some kind of migraine this is just another type... I tried asking is it normal to get this MANY type of migraines... he shrugged and left, came back and said my MRI showed leison which could account for it, go home, rest...

So productive hospital times...
I think being allergic to the key drugs to stop migraines seems to really, really annoy doctors...

I'm currently taking Topirimate, Tramadol, Diclofenac, Cocodomol/Migraleave, Colecalciferol and Fluoxitine which is my lowest list of prescription drugs I've had since I was a kid I think...

I also take a Vit B Complex, Zinc, Probiotics, Magnesium, Cod Liver Oil, Chromium, Ginseng & Biloba, Glucosamine and L'arguine on recomendation..

I'm allergic to all the bleeding Triptan drugs, SEVERAL A&E trips for docs to listen to that...
I've been on.. Pizotifen, Amytriptaline, Paramax, Propanolol, Gabapentin, Domperidone... I think there are other ones as well but I actually can't remember them... the lists are finally getting to long for me and the docs already started doubling back on them, I've been on most of these twice, the Amytriptaline I was up to 500mg a day (Not fun...) but the Propanolol but me right into hospital... so no repeatsies...

So yup, hellishly awkward, also because that is just my head, I have sciatica, restless leg syndrome but a weird incredibly painful type that affects my arms and legs a lot of the time, hyper mobility... also I'm very dyspraxic... which combined with Migraine drugs almost tripples my chances of walking into doors... which I can admit to doing at least 3 times a day...

Loki

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Join date : 2012-03-16

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Re: Heylo from Confusing Girl :)

Post by Tee on Sat Mar 17, 2012 8:53 am

Hi Loki and welcome to the 'confusing girls and boys club' Smile

You are not alone - although you do have a lot going on there and I am sorry to read you started at such a young age Sad

It is quite normal to have more than one type of migraine - I have 3 types....Where are you and what doctors do you see?

Have you managed to work out any of your triggers?

Tee x

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Re: Heylo from Confusing Girl :)

Post by Loki on Sat Mar 17, 2012 9:41 am

The multiple types thing is pretty weird, I'm hoping now I've moved and I have decent doctors I might get a chance at being told things about my conditions for a change. I was given an on the spot diagnosis for hypermobility by this new doctor so I am hopeful lol.

I'm in Nottingham now, moved here not that long ago from Birmingham, I'm being switched to the Neurology/Migraine clinic from the Birmingham one, which is a relief as I kept coming across a doctor who kept telling me to take Aspirin... which was really annoying as I have Asthma and I'm quite allergic to Aspirin, something I told him every time, plus seeing at 8 tramadol a day, 3 diclo and 8 cocodomol don't dent my pain, I doubt an Aspirin is going to be the amazing cure!

I've not spotted any food triggers, I've tried most, chocolate seems to keep them at bay, I tend to keep to a low GI diet as my new doctor told me high GI foods could be bad for my migraines and for me in general. Stress is a massive trigger, I just fled (best word) a dire abusive situation after having a nervous breakdown, We think that's what triggered the heamplegic migraines.

The only other trigger I seem to have is cold... if my ears get cold - Instant migraine. Otherwise I just seem to get them randomly. Especially the cluster headaches they just tend to wakes me up and heylo, good morning, we thought you could do with some lancing agonising pain the morning! see you in half an hour!

I suck at keeping a migraine diary, I just can't seem to keep one up for the like of me, plus occasionally my head goes black, especially when I get the cluster headaches (I managed to have the same conversation 5 times 1 morning) so remembering to write in a diary is usually annoying, plus I have pain all day, it just changes now and then lol!

Loki

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Re: Heylo from Confusing Girl :)

Post by Tee on Sat Mar 17, 2012 10:49 am

It is hard to get your head round it at first - but migraines can change and many people have more than one type... and even within just one type not every migraine is the same.... You might find this interesting...

http://migrainetalk.forumotion.co.uk/t185-types-of-migraine

I am sorry you have had a rough stage in your life - stress is a certain trigger - lets hope the docs in Nottingham can do better than Brum....

Here is a list of triggers which might help you - Trigger management is a must with chronic migrainers - so the more you can work out the better..........

http://migrainetalk.forumotion.co.uk/t330-types-of-triggers

I understand the problems with the diary - but the doctors do like to see them and they help you fill in the MIDAS sheet - the sheet when you see your consultant - we have a few examples of simple ones on here if you wish to try again... I only record my pain and auara levels now and what med I took and if I was on a period. I May record something out of the norm too.

I was wondering about the amount of pain killer you are talking - have you ever spoken to a doctor re rebound headaches???

Tee

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Re: Heylo from Confusing Girl :)

Post by Loki on Sat Mar 17, 2012 11:50 am

Hmmm really is a few more migraines types than I knew about, none of my doctors thought to tell me about them lol, it was usually the ER doctors who "upgrade" me with my migraine status, my doctors tend to just shrug and nod.

I've had a few migraine diaries and they usually last a few months at a time, they tend to fall away after a month or so or when I go through a particularly bad bout of pain or a bad down turn of depression.

My old neurologist told me that all of my migraines were MOH and took me off all of my pain killers, so no Tramadol, no nothing... I weaned down over 3 days of bad pain then the small supply I had been "allowed" then started the excruciating pain which I was informed was "Detox", which point I said, fine you going to either give me back my tramadol or sign me off work for a week at least as I can't work in this condition, finally got signed off which was good as I spent 4 days screaming on my bedroom floor throwing up, not just my head, my legs, back and arms too, until I was screaming really loudly in pain one night and then passed out, which point my ex decided to call an ambulance... to which when I go to A&E, I had to be strapped down to the bed, I don't even remember much except that it hurt and the end result was that the doctors figured the only thing they could do was give me morphine (As antipsychotics didn't do jack, oddly... and whatever else they pumped into me) I woke up not long after that 7 shades of sore, and the next day with a script of tramadol lol...

Loki

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Re: Heylo from Confusing Girl :)

Post by Tee on Thu Apr 05, 2012 12:58 am

Oh you that sounds horrid - to go off meds that quick takes some doing - I do agree that MOH can often happen with chronic migrainers and detox is a good thing to do - but over a few days is a wow - I did it over a few months... I found the MOH pain to be different to the mig pain - once I had done the detox the tight band round head and back of head pain went, but the one sided head pain and the neck pain remained......... did you see any difference?

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